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Thursday, September 29, 2011

Boston

Sam and I flew out to Boston today for a regularly scheduled appointment. We arrived in Boston at 11 this morning and got back home about 10 PM tonight. What a day.

The news from Boston was all good today. Sam's weight gain goal is 1 gram per day. He gained exactly 1 gram per day since our last visit to Boston in July. His labs look terrific. The last set of labs from August were all within normal range, the comment was made today that if they didn't know his history they would never guess that he has Microvillus Inclusion Disease. All of the issues we were having with liver enzymes and anemia has normalized. All in all Sam is doing well and is very healthy. His liver ultrasound from July looked good, no question regarding whether he will need to be listed for a liver transplant or not.

We discussed Sam's frequent vomiting today as well. These episodes are still occurring periodically and there really has never been a cause that could be found. After everyone got a whiff of his breath today, we are all in agreement that we are possibly dealing with bacterial overgrowth in his gut. We will be starting an antibiotic, Cipro, for 7 days to see if the symptoms improve and go from there.

We continue to keep an eye on his central line. The granulation has gotten a little larger and continues to have a pussy discharge. The site and tunnel still are not showing any sign of infection.

Boston is now managing 7 MID patients. I was told today that Sam is, by far, the healthiest of the 7.

We also discussed the possibility of moving our Omegaven study from Boston to Madison. I won't get my hopes up yet, but there are a few ideas on the table on how to make this happen so that we can travel to Boston less frequently.

Also on the Omegaven front, it sounds like things are moving closer to FDA approval. We've heard this before, so I will believe it when I see it.

This past week marked three years since the first time time that Sam came home from Boston. It marked the end of a two month stay there. For three years we have been traveling to Boston every other month. Sam has made the journey from Wisconsin to Boston 20 times.

We are grateful for everything that the team in Boston has done and continues to do for Sam, but the frequent trips have taken a toll on us. I have a lot less hair and what is left is quickly turning to all gray. Financially the trips have also taken a toll, and we have had a lot of help over the last three years to pay for those frequent visits. We can never say thank you enough to everyone that has helped in big and small ways.

Don't forget to check out www.sellingforsam.com. The proceeds from the sales on that site help to cover expenses for travel and medical care for Sam. My wife has been hard at work to continue to add new items to the store and it sounds like several people are planning to donate items for the store in the near future.